Halloween

Halloween is almost here!! I am excited!!

It's the best holiday ever!! I get to see a good friend of mind, I get to celebrate my favorite holiday and I get to sorta dress up, I can't do to much because I just can't handle on that stress on my body. Its really hard to handle life when you are chronically ill. You have to battle the "what i want to do," "the what I should do," and "the what I need to do." I am going to do a dramatic make up and do my hair somehow which I love do crazy in your face makeup but only so many places i can wear it. I do not go out at night or do much of anything formal so this is the one day I can do fancy makeup and not be to weird. Ah who cares I always look "weird."

Halloween has always been my favorite holiday but as I have gotten sicker the less I have been able to do. I have a limit of what I am able to handle physically. I can't put stress on my body and I get tired very quickly. So there is no decorating, there is no handing out candy by myself, there is no dressing up and having fun. But I am so thankful for the people that let me hang out with them for holiday and allow me to apart of their lives. It makes me beyond thankful for what people do for me to help me out and help me live a normalish life. I still have to have my oxygen at hand and IVs, but I am ok with that, I also see it as half normal.

I am gonna keep this shot but wanted to wish everyone a happy halloween!!!
Love Y'all
~Poppet

Love Your Life

I am in my late 20s, when the house is "to quiet" they still come looking for me, I am either up to something or I am sick... Today I was dying my hair!! lol Putting the teal back in it. I was so excited to be able to dye my hair again. Its the little things in life. I use to be upset that I could not dye my hair, and oh how I missed my pink hair, and I needed it back. I told Superman and he said I could!!! :-D a year later I still have dipped dyed teal hair!! lol Truly the little things in life.

Then there is painting my nails. I am sure it was Sif that found the nail polish she's awesome like that.  Well I now have a collection of nail polish and painted my nail all the time, something I thought I'd never do again, or get tattoos for that matter.

It really is the little things in life that make me smile,  a simple text to let me know I am thought about. Hugs after a long time of not seeing you, a phone call, or an email out of nowhere. Thats what matters. I didn't always think this way though. I took advantage of the face i didn't have to think twice  about anything. I was a dare devil that never said no, now I have to think everything over. Will it bother my lungs?? Will it stop my heart?? Am I allergic?? Whats going to be there??

Yeah Wonder Woman had her hands full needless to say lol which is why they still wonder what I am up to. I know Wonder Woman came home one day and my door was hot pink and teal. The fumes were so bad in my room i had to sleep on the couch... If you know her you know the look I would have received. But thats not my life anymore, though those were some fun times. And somethings I do miss terribly like concerts. But I learned never take anything for granted ANYTHING. You can walk the mall?? Thats amazing in my eyes. I remember once me and Sif under estimated the distance from one to the next... Yeah I survived though. Now i have oxygen to get me there. I loved theme parks!! Now sighs OXYGEN. Which is crap but I have so many amazing memories with a lot of people at those places. It was truly awesome and I always beg to go back haha. Yes to sit on oxygen and watch people enjoy themselves.

I have learned to enjoy the little things in life, like painting my nails, doing my hair, getting tattooed, finding an awesome new album!! Those things are what truly matter. Sitting with my parents at the pizza parlor getting in trouble with the All Father because its what we are good at. Hanging with my friends to laugh over nothing, snapchats, and FaceTime. Going outside to feel the wind in my hair and the sun on my skin. These are truly amazing things that so many take for granted and we just need to slow down for 10 minutes and just take everything and thank God for such a beautiful day. Every single day, and when it rains, thank him for the sun that comes after the storm and the shelter to protect you.

Thats what truly matters,
Love
~Poppet

Halloween is coming

I am not sure where I left off last week, as I have not been on here all weekend. It was a good and bad weekend really.

Well, yesterday I was sitting in my chair drinking coffee watching Hunger Games, next thing I know I couldn't catch my breath, my chest was tight, I couldn't move my mucus. Wonder Woman said I looked hot and was probably over heated. The thing tho was I was freezing. I did a cocktail of stuff to feel better. Oxygen, vest, mucus thinners, pills, and spicy food. I woke up with chest pain but I mean my Doc says not to worry and lay down, use heat, run your IV. YAY POTS!!! (Note: This is what my doctor tells me to do, if you doc tells you something else do not go by my blog). So it went from CF to POTS. I got everything under control now I think...

Saturday was fine though. I had pizza (I made it) with Wonder Woman, I went all over town looking for Vegan cheese that I could not find and was willing to drive an hour out to get some. lol Yes it is SO worth it but that day it was just to much. Was not planning on coming home to make pizza, I was gonna make it Sunday, but anyways. I am trying to work out recipes for the Seniors in December. My pie dough roll overs that are for dinner worked much better then the pizza. I was not a fan of the dough and neither was Wonder Woman, it also did not heat up well. I know the pie dough was. OK this not a food blog!! lol

Halloween is this week though!!! I AM SO EXCITED. I am going to see one of my Mom's and hang out with her:-D. I am not gonna do much to dress up, that is just to much on my poor little body. So I am gonna do my hair, and makeup, hopefully classy pin up style. I also have a 70s outfit in there to, crap I have 80s to. So we shall see what happens. I have not cut pumpkins or decorated, I am scared it will be way to much on me, and then need a ton of help to get it up and down. Grandma already helps me enough I do not want to put anything else on her. I know cutting pumpkins can cause bacteria and such to grow so thats out as I can't afford another infection. Though I just found out how to color one, so I need to get one ASAP and color it like my favorite drummer.

Not much else has been going on... OH my blood sugar has seemed to stable out a bit, and I am still eating my sugar as I am suppose to :-)

Love Y'all
~Poppet

Update

So I am still struggling to keep my blood sugar stable!! What in the world. I am just gonna stick to my normal diet and eat cookies and PB and chocolate chips twice a day. I am sure I eat peanut butter more then that lol. I never thought something like this would happen at all lol. I have even been lectured about this but I had NO idea this would happen.

Refined sugar is AWFUL if you have POTS. It can make you symptomatic, which means you are going to have a rapid heart rate, possibly pass out, mess your heart, and over all just make you strait miserable. Considering I have CF, and diabetes is a risk in the life of CF, I figured not a bad idea at all. Boy was I wrong!! lol. I have been downing sugar like I never have before. I am sure I am gonna eat more before I go to bed. I get shaky, nautous, weak, and very tired. I eat sugar and feel much better then an hour or so later... Sighs...

I am all about being healthy. I eat a balanced diet, I stay active, and I drink an absurd amount of coffee. I drink it black, so its healthy. Yes that is my story and I am sticking to it. Its delicious and keeps me stable somehow.

But on to happier news. I did make my weekly starbucks and target trip, to walk around. Get some exercise, pick up things for Wonder Woman. lol I have a crazy interesting life. I didn't stay as long as I normally do but I did still get out and walk around. If I can get my life back stable, I am gonna start working out again next week. Which is great for my lungs. So I am praying that I can get there successfully and safely. And somehow manage to keep the cat way from the tread climber as that is her place to hide. She loves it in the sunroom, she can stalk her prey.

I am still sleeping with my oxygen on though, it does help with the horrid stiff ness in my lungs. Apparently I was not getting enough oxygen in my lungs at night, so far this has helped keep me stable and I am staying off of it during the day unless I go out, which then i need it. There really hasn't been much going on.

Though I did experiment with a brown sugar butter cream icing, its grainy but soooo good, and I had it on chocolate PB pancakes. OMG, yes it was gluten free and vegan, and it was so heavenly!!

But I need to hop of here and do more treatments and eat more sugar.

Love Y'all
~Poppet

Dysatuonomia Awareness Month

Well I had to quit the No Sugar Challenge. It was highly affecting my health. The first night Wonder Woman put on infection watch my lungs were so congested. I couldn't talk with out coughing and wheezing, the next day I was struggling with low blood sugar, calling her going "Hey I am dizzy and feel sick." She told me to eat sugar and eat it now. I did, and I am still struggling with it today. I figured with CFRD, no sugar would be fine, since I do not have CFRD YET, yep not how it worked out. I guess I depleted my sugar levels and now I am trying to catch up. A nice snack of pretzels, peanut butter, and chocolate chips seems to be helping. I am currently stable, well just had my snack. This not the expectation that I thought was going to happen.

Though to more important things. It's dysautonomia awareness months. One of the things I live with. It's define as dysfunction of the autonomic nervous system, which is what controls your blood pressure, heart rate, respirations, digestion, basically everything you do not think about it that your body controls daily. My form is POTS. No I am not gonna bore you with the scientific definition of what it is. But I will tell you what my daily life is.

Every day I wake up and connect to saline, take a handful (10) pills. I do other meds to but they are not for POTS. I down a bottle of water and eat an apple with peanut butter. This what I know makes me stable in the morning. I run 2 - 3 liters of saline a day, and eat "just enough" salt. Which I am OK with excess salt. Im a Chef!! lol Anyways. I have to stay off my feet as much as possible. There is no excessive standing, I could pass out. I get chest pain from excessively high heart rates. I eat several small meals a day. Normally high in salt to keep me stable.

If I go out, I need to take saline with me. I need to make sure I take a snack with me, I need to make sure I have a full bottle of water. I can't get hot either it will make me sick. I can not go anywhere with out this. I have to keep an eye on my blood pressure, I can not miss a meal or a dose of medication. So I tend to take all this stuff with me as well...

This life is crazy. Its constantly revolving around medication, IVs, doctors appointments, going to get B12 shots, different infusions, constantly making sure I have taking everything. Staying in doors while its hot, making sure the house is cool, not going somewhere there is no electricity. It seems like such a burden. However there are people with POTS that are sicker then I am, and people healthier then me to.

There is lots of praying to, asking to help me thru the day, to stay stables, stay out of the hospital. Its a crazy life. But its a blessed life!!

But I must go do lung treatments.
Love Y'all
~Poppet

Update

I am not even sure where to start this blog today!! haha I guess i'll just pick something and go from there.

Well Grandma just set up the sunroom for me to do all my treatments at. Its so odd being in the sunroom though, I do not have Dog Dog demanding her attention. Its also odd being allowed out there. I was horridly allergic to Dog Dog and it took a bit to get the allergens out but they did it and now its my treatment area. I know my equipment can get loud. I can also now go out there and walk on the tread climber (with no tension) and get my lungs some exercise. I gotta beat this crazy disease. I gotta stay healthy. Between that and diet. Well treatments, exercise, and diet I am bound and determined to stay my healthy.

Staying healthy is hard!! Diet is hard. Well being sick is hard so I am willing to fight all this with all I got. So i decided to do a week with out sugar. Processed sugar. I do not eat that much sugar as it, but its a good experiment. How does sugar affect my health?? Will have to eat more to keep my blood sugar stable?? Will I be less symptomatic?? I am curious to see how this works. Post the outcomes. Giving up gluten and meat has helped me dramatically but its more so that I can not digest them. Its painful, makes me bloat, and makes my symptomatic which is kinda crappy but I rather be healthy then eat stuff I should not.

If you read the last blog you know I have been a bit sick with my lungs recently. I had some horrid flare that put me on 3l of oxygen, Benadryl, and lots of treatments. Well I had come off my oxygen and was waking up with my lungs so stiff that I could barely breathe!! It took tons of meds to get them moving and one day this past weekend I was going back and forth with Wonder Woman because i did NOT want to put my oxygen back on, but apparently my lips were pail, and I was showing signs of stress... Nurses lol NURSES!! It came to that to lol "but I don't wanna!!" "Im the nurse do as I say" "Yes Mam."  I promise no matter what you tell a nurse especially GOOD nurses they can pick up on signs and symptoms that we don't say. "Your lips are pail, your struggling, and your coughing." So she told me that if I wear the oxygen at night I could be off of it during the day and my lungs would "loosen" up. Sighs she was right. I have been OK for the past couple of days using it at night. I also bought a ginger lemon tea. OMG its so good and it soothes the airways so well. I am in love with it.

I think I will go make some now
Love Y'all
~Poppet

...

I have been pretty sick for the past 24 hours. I got my b12 then a major storm came in. Yep it led to me texting Wonder Woman "i can hear myself breathe, on oxygen, and benadryl... Which lead to a phone call going whats wrong?? Hmmm i DK lol The weather?? B12?? My body hates me?? Yes feel bad for her I get fiesty when it gets to much at times. My oxygen is still on 3, but I am off benadryl and steroids. So thats a plus but I did up my PT to day, I turned it up and increased the amount of time I am doing it. I also upped my saline. So I do have it under control.

I am more then ready to get back off my oxygen but the weather has suddenly got yucky again. And I swear my PICC dressing is hanging on by a thread. I was to sick to get it done last night. When Wonder Woman is peaking in checking on you, you know its kinda bad. Which I always feel bad I can not protect her from this crazy life. Lets face it, she's a nurse, and an awesome nurse that is well respected by my physicians. So she not only gets it, she knows how serious this life can get. Or well is. I always try to protect people from this crazy life. I try to be honest and strait forward about my disease, but at the same time play down how serious it is. Which is harder to do with CF, then it is POTS. MCAD is pretty bad to.  "Whats MCAD??" Ohhh.... its just a disease that affects the mast cells in the body, they can burst prematurely and cause an anaphylactic reaction, it has way to many triggers and I take meds daily to help lessen the likely hood of a reaction. I usually get this dear in head lights look. Or if they are medical, or know what allergies are, they get this OMG look on their face. Its kinda serious.

Yes all this rambling has a point lol. At the end of the day I have to some kind control over all this, so I tend to right on here, sew when I can, and COOK!! Which is where I get some control and say over how I feel. Food is a big deal on staying healthy. I see the "DUH" looks thru the screen. But really I can't eat fast food, fried food, gluten based food, high protein food, and I am allergic to quite a few things. "So what do you eat?!?!" I am vegan!! I eat a very healthy protein based PLANT diet, with gluten free, dairy free, and egg free options. I make recipes, i alter recipes, and learned to make things that are safe and to keep me healthy and pain free. Now I do have to stop what I am doing to take meds, I have to keep an eye on IVs. But isn't that normal?? lol On days that I can, I get up and moving to keep the junk out of my lungs as much as I can. Its a crazy life.

I also take a lot of time to educate people on what my life is like, the best I can. I need all the awareness I can get, not just for me, but for people like me. If more people knew what we went thru, if more people understood are "limitations" and how we can push ourselves to do what we think we can't. Hoping people would be less judgmental. I always here I need to be more positive, I need to pray more, I need to stop dwelling. Alls I have to say to all that, "I got this!! This is my life and I make the best of it, oh and I am well into my 20s and have my own lungs!! THATS AMAZING!!" I also thank God for allowing me to be so blessed with all these crazy people in my life, and allowing me to still be able to have function!! OK but before this turns into a rant which I think this already is.... Ima hop off here lol

Love Y'all
~Poppet

CF

I am often asked what cystic fibrosis is, and I never know what to say, with out terrifying people of the cut and dry truth. Which I try to avoid lol I do like having friends. POTS is less scary to talk about because it's not as life threaten though it can be. I've been asked to speak on it today and tho I know all about it, in ways only I or "one of us" can understand.

CF is crappy disease that affects the entire body, my lungs, my heart cause of the lungs, my digestive system, it can affect my liver and kidneys as well, oh and the pancreas!! It's a disease that effect the cells in which chloride and salt can not swap "chloride shift problem." It is a rare genetic disease. It's crap if you ask me. Since the chloride does not shift right my mucus becomes extremely thick. I can not move my mucus with out thinners. My lungs are pretty damaged at this point, it's very hard to get air in and at times impossible to get air out, I am dependent on inhalers and at times oxygen. See scary!! Who wants to hear "my body doesn't know how to function so my lungs are slowly being destroyed" yes u have  I said that to people before. I get this look of horror. But it's facts of life with CF. I eat constantly because I can't break down food properly or get enough calories because my body does not comprehend how to absorb it, well it can't because back to that mucus again. Yes it's everywhere in the body, for you "normal" people it acts as a lubricant for me, it's a nuisance. See why I call the disease crap??

No one wants to hear the sad truth about CF, though it's a fact of life, crappy fact but a fact none the less. This is why I never know what to say. I don't like being known as the girl with CF, I much prefer the weird crazy girl with tattoos. Or the chef that her Grandma just doesn't "get" lol, I let the food "talk" and make what I think sounds good then boring all recipes. The girl with such a passion for music it plays constantly, even while watching tv, unless I like the show then well...

Yes my life can be scary, confusing and seem crap, but it's not that way at all. Because of CF, POTS, MCAD and even my food allergies I am truly blessed beyond belief. That's who I am, that's what I want people to know, you can make the best out of all this and lead a beautiful life.

But I must go for now
Love Y'all
~Poppet

Blessed

I am not sure where to start haha things have calmed down a bit since last week thought my heart is still going to a bit crazy, I am not sure if it was from the stress, missing a few doses of Mag, which can drop my Potassium, or both.

But I did get out of the house some. Which reminded me of quote, "I am truly blessed with cystic fibrosis because with out I would not meet the amazing people in my life." I am not sure who quoted this but I am sure I found it on pinterest if not google lol.

Anyways... I met this lovely family this weekend and if it wasn't for my CF I would have never met them. It is so nice to meet such lovely people in this crazy world, people who truly care about others. I love meeting people that gets whats going on in your life, its very rare to find someone like this, but when you meet them you realize what a blessing such a terrible illness can be. I won't elaborate more on this, I don't like posting about others with out there permission.

There are many others that I would not have in my life it wasn't for these crazy illnesses. Not only CF, but POTS to. Thru out these past couple of years, I have become friends with many wonderful people I would not have met if it wasn't for this illness. Half the people I talk to would not be here. My Pixie Momma, my sweet Angel K, Batman, my HU family. Sif has been here for a long time but she proved people stick around as did a few others. I can not imagine life with out these people.

I started talking to my Pixie Mom, when I found out I had POTS, I was not sure of the diagnosis but I had posted something on FB about all this and we have been close friends ever since. She has spent countless hours talking to me and becoming a huge part of family over the years. I am not sure I would have gotten thru all this with out here keeping an eye me, even thru the net!! I love when I can sit and chat with her and catch up on everything going on and she has never once let me think I can not make it thru all this. Same with Batman, constantly makes me laugh and assures me I can make it thru all this. Never lets me so much has think I cannot make it thru this and always finds a way to keep a smile on my face no matter how rough this life gets. Life can't get pretty crappy when it comes to these diseases. Its a crazy life, in and out of the hospital, multiple heart and lung issues. Reaction after reaction.

My sweet angel?? One night my phone was dead, no charger, admitted to the hospital. She chatted with late at night so I knew someone cared. She pushed me to get better to make it to Nurse Pinning!! Which I did lol, I got ready at the hospital but i made it!! She still checks up on me and encourages me to this day. She keeps reminding me I can come see her, the way Pixie mom does. And that alone always encourages me to keep pushing and to never give up. Yes my local friends do the same, but its nice to know that these people love me just the same.

My HU family?? They consistently help me and Wonder Woman with all the stuff that goes on in my life. They always come with smiles and hugs and pop in to see whenever they can. They are also the one's that allow me to teach students about this crazy thing I call life. My life.

This is why all this is considered a blessing. These diseases, this life, have truly blessed me and some days I have to stop and go this is why God gave me these diseases, and thank him.

Until next time,
Love Y'all
~Poppet

Why I have not been on

I'll probably delete this but,

Sorry I have not been posting much and pretty much negleticing this thing, Dog Dog had not been doing do to good and i was woken up at 7am yesterday been told it was time to make the call. She needed way more then the internet does as did Wonder Woman. But we are not gonna make this a sobbing mess, though I am sure some of just read this and burst into tears.

Dealing with grief, I have also had to deal with many health issues, which usually means Grandma was pulling me away from the sunroom to make sure I am not in the hospital as well, I had horrid lung issues around her, and the stress of course triggered my MCAD and I was on a lot of Benadryl and oxygen. Unfortunately stress is an MCAD trigger and its just a bunch of heart and lung problems with hives. Bunch of crap!! Tho we can all learn something from this sweet girl I called Dog Dog.

Compassion!! Most people see the girl with IVs and oxygens and sometimes my face covered to protect my lungs. She saw the girl that throws her ball and fought her to get it, she saw a friend, and when I didn't feel good she laid her head on my shoulder and kissed my cheek and brought me her favorite toy, as her way of saying I love you. This does tie in with unconditional love. She has me when I could go outside with her jump on the trampoline and play. She still loved me when I could not do that, and eventually I could not go in her room I had to see her outside, and she still loved me none the less.

She never judged anyone, she always saw them as a friend, even though she was judged cause she was quite a big dog (most people were terrified of her) and it never bothered and taught them she was a kind gentle soul and not to judge her by how she looked but the kind soul inside. We are all judged by are looks, what is wrong with us, are personality. When thats why we should be loved the most. For are "flaws" that define us as who we are and who we have become, and more importantly are souls. We may look tough or hard but some of us are quite kind in are souls.

But before I get upset I am gonna jump off of here, I'll give you a health update later.
Love Y'all
~Poppet